Is it back? : Hello, it’s been a while since I... - My Ovacome

My Ovacome

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Is it back?

ShamilaS profile image
9 Replies

Hello, it’s been a while since I have posted here. My mum’s cancer had been in remission since 2017. However, her latest CA125 level is gone up from 12 to 32.5 over 8 months. Coincidentally, she had her Covid vaccine a week before she had her bloods done so we are not sure if it could be down to that. Her consultant has asked for her to now have a scan and more bloods to see what’s going on.

My mom is very scared and so are we. Has any one experienced rising CA levels after the vaccine or what experience did you have with treatments in remission at her level. Thanks

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ShamilaS profile image
ShamilaS
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9 Replies
Lyndy profile image
Lyndy

Hi ShamilaSThere have definitely been reports I’ve seen on other forums about raised ca125 after vaccination. I think it’s good that they are doing some investigations though because if there is something going on it’s best to know and get treatment before it becomes a problem xx

ShamilaS profile image
ShamilaS in reply to Lyndy

Thank you for your reply Lyndy. Can you please point me to these forums? Thanks

Lyndy profile image
Lyndy in reply to ShamilaS

I think it was the Target Ovarian fb page but I have seen others asking about this..sorry there are several fb groups but I think it was TOC xx

SophiaMariaA profile image
SophiaMariaA

Hi Shamila - frightening times - the rise in CA125, especially when it's the first. Hard not to go immediately to "it's back!" Do take a breath however and try to be patient as the tests are done and results come in. (It's like being on a fast moving train with everything going well enough and suddenly you're in a dark tunnel...you don't know what to do, you can't get off the train, you feel anxious about how long you'll be in the tunnel, etc. Instead of panicking, however, it is best to trust the conductor, the engineer and the folks who built the tracks - they know well how to get you out of the dark, back into the light and moving toward your destination). What your Dr. has ordered is the right thing - trust the process.

Whether or not your Mum's cancer has returned can only be determined by the evidence of physical findings, CT/PET findings and/or reports of symptoms...the rise in CA125 alone may not mean the cancer has returned- and it's still within the normal range. Following up with the tests/scan is the right thing to do.

I've been on the CA125 roller coaster for more than a year now - reaching a nadir of 10 back in 2018 and then watching it climb every three months for all this time. My Onc. told me that if the number rises sequentially thrice and/or doubles to a level over 35, it has likely returned. However, that did not prove true for me (yet). I had six sequential (small) rises and my last test doubled my number to well above 35. I went in for the recommended tests (CA19-9 and CT/PET) which showed no evidence of disease. Thus, I am determined to "not have" recurred at this time.

Though I can breathe a bit more freely knowing that nothing showed up in the CT/PET scan (CA19-9 numbers were concerning) I remain on watch and wait.

To get me through the challenge of assuming the worst, I often refer to a quote by a lovely woman, Corrie Ten Boom, who experienced the worst of WW2 - she wrote:

"Worrying is carrying tomorrow's load with today's strength- carrying two days at once. It is moving into tomorrow ahead of time. Worrying doesn't empty tomorrow of its sorrow, it empties today of its strength."

I offer it in hopes that you and your Mum find strength in them and can be patient during the testing and waiting for results stage. I hope and pray that her scan is negative and that the two of you can spend the coming days in comfort and in peace.

Do let us know what happens.

ShamilaS profile image
ShamilaS in reply to SophiaMariaA

Thank you so much for your heartfelt post. It brings me such relief to have such wonderful people here on this forum. It surely is a bumpy ride and you are right about trusting the conductor. So happy to hear that you are still in remission. Sending you prayers and love. Shamila

LesleyGB profile image
LesleyGB

Hi Shamila

I was horrified to be told that my CA125 had risen from 16 when I finished chemo in October - now just on immunotherapy (Avastin) - to 23 a week or two ago. The nurse I spoke to wasn't concerned and when my senior CNS rang re delaying my appointment for 10 days I asked him about it as well. He told me "not to bat an eyelid" and that my CA125 had been up and down since June but was always in the normal range. Apparently it does fluctuate. Hopefully its a flukey fluctuation with your mum and all will be well with her scan.

x

Dmercury profile image
Dmercury

Yes, because I’m on chemo for a recurrence my labs are taken weekly. My ca125 jumped 4 pts which is a lot for me two weeks in a row, then dropped 5 pts. On the 3rd week. I believe it was due to the vaccine. I’ve heard that this happens to a lot of women. Try not to worry. Good luck.

Cbyrdie profile image
Cbyrdie

Shamilia I had my first covid vax on 3/4 and a week later I had my bimonthly blood draw. My CA 125 went up 30 😬 the next blood draw two weeks later it had come down 29. I totally believe it was the vax and have put off my second dose until I finish treatment in June. I hope this helps :)

Cumbrianlass5 profile image
Cumbrianlass5

Mine has certainly shot up since the pfizer vaccine, gradually from 24 to 41, then 57 and now 101 over six weeks. My oncologist does not know of any connection between the jab and rising levels and says it could well be because I have a really rotten cold I cannot shake off. He says he is not worried by the figure and we will test again when I have got rid of my cold. x

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